Issues in the spectrum of associations representing

Pietro Cirrincione on the AE Vice-president [email protected] @pietrolem

Autism-Europe Brussels, Belgium AutismEurope.org @autismeurope Amsterdam, 11 November 2017 /autismeurope.AE Hogeschool van Amsterdam (HvA) (University of Amsterdam) What is the correlation with Autminds theme?

InsideOut

Traditionally the spectrum about autism is referred to the heterogeneous conditions linked to it, in my contribution the spectrum about autism is referred to the heterogeneous associations representing it and the complex relationships among them.

2/30 Italians like to make associations for everything

In Italy associations are around 500 000 (ratio is 1 association to 120 inhabitants!): cultural, sporting and recreational, social cooperatives, foundations, ecclesiastical bodies, volunteer organizations, non-governmental organizations, trade unions, study and research institutions, training, mutual and health care institutions

Example of partners for a local event for cats lovers

3/30 Background: my international affiliations

Vice-president Autism-Europe aisbl almost 90 member autism organisations from 38 European countries, not yet autistic- led, only individual members AutismEurope.org

Information and Communication Technologies Expert Group Member European Disability Forum EDF-FEPH.org

Board member World Autism Organization very limited representation WorldAutismOrganisation.com

Invited Expert World Wide Web Consortium the main international open standards organization for the Web W3.org

4/30 Background: my Italian affiliations

President and captain Autistic Football Club asd Inclusive football sport club of people on and out of the autism spectrum AutisticFootball.club

Board member Gruppo Asperger onlus Italian national association of people on the autism spectrum and their families Asperger.it

Board member Gruppo Asperger Lazio onlus Italian regional association of people on the autism spectrum and their families AspergerLazio.it

member Asperger Pride aps Italian national association led by people on the autism spectrum AspergerPride.it

5/30 Background: my Italian affiliations

Athlete member Atletica Roma Acquacetosa Athletics amateur sports club AtleticAcquacetosa.net

Obviously, I’m involved in other volunteering associations as active member, but in other fields than autism, so I do not mention here...

6/30 Background: Autism-Europe collaborations

7/30 Background: my Italian collaborations

Cooperativa Garibaldi Work cooperative made by people on the autism spectrum Garibaldi.coop

Giuliaparla onlus cooperative of caregivers for autism Giuliaparla.it

OfficinaMente cognitive and behavioural psychologists practice OfficinaMente.org

culturAutismo cultural association by professionals for autism culturAutismo.it

Studio Caretto e associati association of psychologists for autism CarettoEAssociati.it 8/30 Background: my Italian cooperations

Laboratorio di Esplorazione Multimediale association of social promotion led by people on the autism spectrum, born from previous work cooperative LEM LEM-aps.org

Barikama’ Microcredit project led by African people and one person on the autism spectrum in Italy Barikama.altervista.org

SS Romulea Football Sport association SSRomulea.it

9/30 Background: my Italian cooperations

Associazione Nazionale Genitori Soggetti Autistici The biggest parent-led Italian association for autism ANGSA.it

Associazione Nazionale Famiglie di Persone con Disabilità Intellettiva e/o Relazionale the biggest and oldest parent-led association for intellectual and relational disabilities ANFFAS.net

Federazione Italiana per il Superamento dell’Handicap Italian Federation of associations about disabilities FISHonlus.it Together Gruppo Asperger onlus we form National Coordination about autism

10/30 Background: my Italian cooperations

Istituto Superiore di Sanità Italian National Health Institute ISS.it

Sapienza University of Rome Department of Social and Developmental Psychology dip38.psi.uniroma1.it

Aglioti LAB Social & Cognitive Neurosciences laboratory AgliotiLAB.org

Società Italiana di Neuropsichiatria dell’Infanzia e dell’Adolescenza Italian Society of Child Neuropsichiatry Sinpia.eu

11/30 Examples: World Autism Awareness Day events

12/30 Examples: World Autism Awareness Day events

13/30 Examples: World Autism Awareness Day events

14/30 Examples: Autistic Pride Day events

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Please note modern autism definition

Report of the Special Rapporteur

Report of the Special Rapporteur on the rights of persons with disabilities (12/01/2016)

"37. The Convention on the Rights of Persons with Disabilities has accelerated the process of establishing organizations of self-advocates with intellectual disabilities, of autistic persons and of other individuals who may need extensive support to express their positions.

Organizations of parents and relatives of persons requiring support have often played a role in providing such support and one can find organizations that include parents as well as self- advocates. The role of parents in such organizations should increasingly move towards the provision of support, with self-advocates in full control.

States need to ensure that the will and preferences of persons with disabilities themselves are given priority.[…]" http://ap.ohchr.org/documents/dpage_e.aspx?si=A/HRC/31/62 http://www.ohchr.org/EN/Issues/Disability/SRDisabilities/Pages/SRDisabilitiesIndex.aspx

19/30 Self-advocacy and direct participation

Self-advocacy

Self-advocacy is the defence of their rights in first person and refers to the civil rights movement of persons with disabilities, born from the larger civil rights movement of the '60s and '70s. People with disabilities have the right to take control of their lives, talking for themselves, they can always ask for the support of others.

Direct participation and UN CRPD

“In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.”

Article 4, paragraph 3 of the Convention on the Rights of Persons with Disabilities

20/30 AE process for direct participation

Autism-Europe is open to comprise members from the whole autism spectrum, including organizations led by people on the autism spectrum. Informal meetings among AE members and local autistic groups are conducted regularly.

In 2015 during an AE board meeting, two board members on the autism spectrum held a workshop on how to ensure that autism organizations are representative of the whole spectrum http://www.autismeurope.org/files/files/conference-bcn-2015/involving-self-advocates-barcel ona-03-05-2015.pdf

In 2016 a person on the autism spectrum was elected as the vice-president of AE and one AE full member has chosen to have a person on the autism spectrum represent them for all AE meetings and activities (the Dutch member!).

In some European countries organizations led exclusively by people on the autism spectrum already exist for many years but none of them are yet AE members.

Publications, activities, meetings and governing bodies of autism organizations have to be as accessible as possible by people from whole autism spectrum, implementing UN CRPD, fulfilling in practice disability movement historical right:

"NOTHING ABOUT US WITHOUT US”. 21/30 ITALY: milestones 1/2

1977 – Public mainstream schools for all students: no more special classes/schools

1992 – Law 104/1992 "Framework Law for the assistance, social integration and the rights of disabled persons": a very strong jurisprudence about disabilities, in some aspects strongest than UN CRPD

2005 – Scientific Guidelines about autism by Sinpia (Italian Society of Child and Adolescent Neuropsychiatry)

2007 – Autism table sponsored by the Ministry of Health

2008 – Founding of Fantasia (National Federation of autism spectrum associations)

2009 – Ratification of UN CRPD and Optional protocol

22/30 ITALY: milestones 2/2 2011 – Scientific Guidelines about autism spectrum interventions in children and adolescents by ISS (National Institute of Health) and stakeholders

2012 – Guidelines on autism: Agreement between the Government, Regions and local authorities in the Unified Conference of State and Regions

2015 – National Law 134/15 on the autism spectrum: it places intervention for autism among the essential services provided by the Italian healthcare system. It also updates guidelines for diagnosis and care and promotes research in the field

2015 – Law 208/15 (Stability Law 2016) sets "Fund for the care of individuals with autism spectrum disorder" with an annual budget of 5 million Euros

2016 – Decree for the update of the Essential Levels of Assistance (LEA 2016): the NHS will ensure people on the autism spectrum: early diagnosis, care and individualized treatment, through the use of methods and tools based on the best scientific evidence; updating the guidelines every three years

23/30 ITALY: situation in education Inclusive mainstream school for all but often there is lack of qualified personnel.

Problems: ● implementation ● public funds ● quality of training of support teachers

Limits hard to assure: special teachers/students with disabilities = 1/2, 1/1 in some cases special teachers hours/week = 9 to 25 students/students with disabilities needing intensive support = 20/1

Peer support Some students in classroom become support for student with disabilities together teachers.

24/30 Spectrum of associations

autistic-led parent-led professionals-led (independence, (protection, (intervention, rights...) medical model...) therapy...)

Mixed Mixed autistic and autistic and parent-led professionals-led

Mixed autistic, parent and professionals-led

25/30 Main disability models

26/30 AE acceptable language guideline

27/30 Scientific committee and acceptable language

● Half of the Scientific Committee was made by researchers on the autism spectrum. ● An acceptable language guideline was sent to every congress speaker

28/30 Scientific committee, acceptable language, paradigm change

● During congress I made a petition from participants and some speakers to change words speakers were using ● Now they accepted an acceptable language guideline and they accepted me in their Scientific Committee

29/30 National Coordination about Autism Spectrum

Preparing guidelines for adult people on the autism spectrum, I started a very hard process of mediation to convince associations representing parents of people on the autism spectrum with intellectual disabilities: ● to abandon medical model; ● to change paradigm; ● to use an acceptable language speaking about autism.

Some professionals helped in this process.

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